I was prepared for an easy, relaxing PET-CT this morning: after all, it’s my fifth, and I just had one two very short months ago. What I got was one of my worst experiences yet at a doctor’s office. And it wasn’t the fault of nausea from fasting or a vagal response from putting in the I.V., which I’ve had unpleasant experiences with before, but–insurance. Yes, this is going to be one of those posts.

So I get to my appointment and the front desk person, who I’ve never seen before, knows me. Already I can tell there is a problem. He puts on his best “bad news” face and proceeds to tell me that I don’t have health insurance, much in the same way that he might tell me my fly is unzipped. Never mind that telling an (unemployed) cancer patient that she doesn’t have health insurance is like the worst thing in the world (besides getting diagnosed). “We can go ahead with the scan, but we’re required to tell you that you might be responsible for the full amount.”

I’ve actually heard this several times over the last few weeks (except they usually say “your health insurance has been terminated” which sounds a lot worse) since I had the misfortune of turning 26, whereby falling into a one-month “grace period” with my prior insurance policy through my dad. I am covered, it just depends on which phone number you call and which person you talk to. I am sure the insurance company makes it intentionally complicated so they don’t actually have to cover people during their grace period. I know, because it has taken me, my dad, my mom, and the insurance woman at my oncologist’s office three weeks to work it all out. My parents deserve most of the credit–they agreed to take this on because my emotional stability regarding billing and insurance matters is very low, as you will soon see.

So, because I’ve heard this before, and because we supposedly already worked it out through my oncologist’s office, I say I want to go ahead with the scan because i’m already there and i’m definitely covered. I sit down and start filling out the paperwork. (Is there any chance you could possibly be pregnant? No. In the last five minutes since you started filling out this form, could you have become pregnant? No. Are you positive you’re not pregnant? YES.) I can hear the front desk guy talking about me on the phone with their insurance woman. He calls me over and she proceeds to tell me over and over again that there is no way I have insurance coverage and that she has it IN WRITING that my coverage has been terminated, and if I go ahead with this scan, I will have to pay for it. Basically, she told me that I’m screwed.

What did I do? I started crying. And I ran outside to call my mommy, tears streaming down my cheeks.

The problem just seemed insurmountable. I was already there at the office, fasting for over 12 hours, and I needed to somehow get the insurance woman on the phone with the one person at the insurance company who says i’m covered (reachable only via a mysterious 1-800 number that isn’t posted on the card), armed with only a cell phone. But I wasn’t sure that was possible because I was starting to believe I wasn’t covered.

My mom talks to the front desk guy on my cell phone and I go back to filling out my papers. He calls me back over to talk to the insurance woman on the phone and she apologizes and says i’m covered after all and I go back to sniffling in the waiting room, feeling very young because I had to call my mommy and because i’m the youngest person in the waiting room by at least 25 years. And I have to answer the question one more time: no I am not pregnant.

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I am now left feeling let down. Not taken care of. Not confident that the health care system can fix me before it makes things worse for me. Tired. Sad.

They have the form with my diagnosis sitting right in front of them, they can see that i’m too young to be dealing with all this cancer bullshit, and yet they choose to treat me like a walking checkbook first, and a patient second anyway. I know that they’re just trying to make sure they get paid. But isn’t there a way to do it that doesn’t involve harassing the patient who has cancer and hasn’t eaten in 12 hours in the middle of a very small waiting room? Wasn’t that the purpose of spending the last three weeks making sure that my insurance covered the scan before scheduling it? It makes me wonder if health care is here to heal people, or just to make money. It’s hard to tell sometimes.

I have experienced the health care system as a compatriot and family member more often than patient, but from what I’ve seen, the Doctors define your experience. We’ve switched systems and gone back and forth between doctors with referrals and complaints. Each system is still a business, regardless of what they say, and the bottom line is written in black ink on an expense sheet. That being said, a good doctor can make a world of difference in the experience. I feel as though some are just burnt out by what they see everyday, maybe some didn’t realize the full import of the work they would be doing. Other doctors, the best doctors, are the ones that seem to have an infinite reserve of positive thinking and frank pragmatism. They are honest and hopeful. They understand the business side of things, but try to work with a patient as best they can to keep them happy and calm.

As many solutions and ingenious methods as I’ve seen doctors and hospital systems use to assist and calm their patients, I still haven’t seen a good way to make the infamous waiting room a pleasant experience.

What a horrible experience. As a mother of a small child with a quite severe and very rare disease I am so grateful I live in a country with a National Health insurance system. I never have to deal with crap like this and my child will always get the treatments available (unfortunately there is no cure). The situation living with this disease is quite enough, to also have to deal with insurance companies and uncertainty about getting the care needed would be truly horrific. I am so sorry this happened to you.

LIndsey, thanks so much for sharing. It’s a generous thing to do. You’re a brave person. My wife has serious chronic illnesses, too. She’s also as brave as they come, but if you ask her, she’ll say that she never wanted to have to be so brave. She’d much rather just be healthy. But she’s an inspiration to me and to many others, and so are you.

Just found your blog through huffpo, but wanted to share that I was diagnosed with breast cancer at 23 and recently had my insurance deny my last mammogram because… I am too young. For real, that happened. Also, I turned 26 in 4 months and get booted off my dad’s insurance, too. =/

This post was linked by one of my Twitter pals. Thank you for being so honest and sharing how you feel. I have coverage for my MS now, but the thought of what sort of problems I will face when I have to switch insurance companies next year scares me.

Hi Lindsey, I love that you asked out Joseph Gordon Levitt. He is nuts if he doesn’t say yes. You are adorable and, while I hate that you have to deal with cancer, I am glad it is slow growing and you are getting back out there, living your life.

You do Qualify for social security, for getting free medicare and medicaid. It is not a hand out if is something that you need. Why dont you apply for it? Guaranteed you would get it the first time you filled out the paperwork without ever going to a hearing. This would save you and your parents $$$$$$$$$$$$$$$ which you can use for grad school if your still going to. It is easy and if you did hire an attorney it would cost you nothing. http://www.disabilitylawfirm.com/

My brother was diagnosed with Multiple Myeloma at the age of 22. He passed it in 2008 (at 29). A month later, the hospital called his wife looking for him. She said “This is his wife, may I help you?”. They said he had some outstanding charges. She said that he had passed away at their hospital a month ago and wouldn’t they know that? He said that she would be responsible to pay his charges then. She told him to call their insurance company and hung up on him. I couldn’t believe what I was hearing. How could someone be so cold to her after losing her husband. I was shocked.

I am sorry to hear about your medical expenses, they really know how to kick someone while their down. You should “accept for value”, your medical bills. Use your citizen debt account to balance your debt. Make sure it is a proper bill, or remittance, flip it over and sign “Accepted for Value”, balance from account (SSN without hypen). then sign below in blue (wet) ink. send a copy to the hospital, federal reserve, and IRS, with orders to balance your account. If you are unsure about this procedure, look up Winston Shrout, he is an American that uderstands the system down there better than I do (am Canadian). Good luck, dont hesitate to fire off any questions to me, i will do my best to answer then immediately. The light of hope can chase away your shadows)